Sarah and Shelby's story

Sarah's son Shelby was born at 23 weeks gestation weighing just under 1lb. Here, she shares the story of her son's first four months in neonatal intensive care.

Hold on to hope, even when it feels like that’s all you have left.

Our son Shelby was born on May 4, 2014 at 23 weeks gestation weighing just under 1lb. The four months we spent on the unit were the hardest times of our lives.

There were times we thought we would never take him home and the heartache was unbearable. It really is true that if you have never experienced the neonatal intensive care unit (NICU), you never truly understand the stomach churning mix of emotions you go through. It felt like we were in a bubble, and every time we walked through the NICU doors to the beeping and alarms, it felt like we had stepped into a completely different world.

The first time we saw Shelby I was wheeled in and placed next to his incubator. There were so many wires all over him and I was terrified, but the nurses were excellent. They comforted us and tried to explain as clearly as possible what everything attached to him was.

The guilt I felt that he wasn’t still cuddled up inside of me is something I wouldn’t wish on any mum. People would try to say things to make me feel better, but the truth is, there is nothing, no words, no actions, nothing, to take away the stomach churning heartache you feel.

Shelby was nine weeks old when we finally got our first cuddle, it was amazing. I tried to breathe in his smell as much as I could, and stroked his tiny little hands, which were no bigger than a 10p coin.

After four months of living on the NICU, Shelby came home to us on oxygen, but the rollercoaster didn’t stop there. Three months later he was rushed to hospital, re-ventilated and put back in intensive care because he was suffering from bronchitis.

After five weeks recovering in hospital, Shelby returned home with us. Since then he has been readmitted several times, and had two surgeries, including open heart surgery and a kidney operation. But despite all of this he never stops smiling! He is the most amazing little boy, and inspires everyone he meets.

He is now nearly two years old and is thriving. He is no longer dependent on oxygen, and most importantly, has had no more hospital trips!

I want to say to parents that are currently on their NICU journey; you are not alone, miracles do happen, and hold on to hope, even when it feels like that’s all you have left.

These babies are the smallest people we will meet, but the strongest we will ever know.

If you have been affected by any of the issues mentioned in this post, you can call our helpline for support on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk